“More and more people reach an age where they have to live with declining functional and cognitive abilities and thus become dependent on the help of others in their daily life. Protecting the right to a life in dignity of frail older people is thus becoming a major policy challenge. This report is about how countries are addressing this challenge by developing measures to ensure a high quality of long-term care – care that is safe, effective, and centred around the needs and abilities of the care recipients themselves. In most respects, endeavours to improve long-term care quality lag behind comparable efforts in the health care sector, but there are some excellent initiatives in some countries which combine measurement of clinical effectiveness with patientcentred approaches to improve the quality of life of people in need of care. Such new initiatives to stimulate quality improvement have gained ground alongside traditional regulatory approaches. There are interesting examples of public reporting of quality performance of care-providers which enable older people and their families to make informed choices, and quality grading systems which encourage providers to compete on care outcomes.

This report is the outcome of a two-year collaboration between the OECD Health Division and the Directorate General for Employment, Social Affairs and Inclusion of the European Commission. The report discusses the importance of developing metrics for measuring safe, effective and responsive long-term care services, and looks at on-going country initiatives to improve the quality of life of frail elderly, as well as the technical and broader challenges to measurement and improvement. Providing a life in dignity in old age is not only a moral imperative. It also makes good economic sense if it is achieved by assuring that older citizens can maximise their potential for independent living, thus reducing their dependence on others to a minimum. Empowering older people in such a way also enhances their protection against the risks of abuse or inadequate care. The OECD and the European Commission will continue to work closely together to explore how future long-term care needs can be met in ways that protect older people and their dignity, notably by delivering high-quality care services and promoting healthy and active ageing.”

...“Delivering high-quality care services has become a policy priority.

With the ageing populations and growing costs, ensuring and improving the quality of longterm care (LTC) services has become an important policy priority across OECD countries. The share of those aged 80 years and over is expected to increase from 4% in 2010 to nearly 10% in 2050, while in 2010 OECD countries allocated 1.6% of GDP to public spending on LTC, on average. The goal of good quality care is to maintain or, when feasible, to improve the functional and health outcomes of frail elderly, the chronically ill and the physically disabled, whether they receive care in nursing homes, assisted living facilities, communitybased or home care settings. This report focuses on three aspects generally accepted as critical to quality care: effectiveness and care safety, patient-centredness and responsiveness and care co-ordination.”

...“Monitoring LTC quality has been growing in importance but needs further development.

LTC quality measurement lags behind developments in health care. Only a few OECD countries have well-established information systems for care quality. Four-fifths of countries have indicators of inputs, such as staffing and care environment, but only a handful of OECD and EU countries systematically collect information on quality. Over time work on quality measurement has come to encompass both clinical quality (care effectiveness and safety), user-experience (user centredness and care co-ordination), and quality of life. While the collection of LTC quality data poses a number of challenges, there is a potential for harmonising data collection on LTC quality at the international level. The OECD measures health quality indicators such as avoidable hospitalisations for older people. Another system widely used in LTC, the interRAI system for assessment of care needs, aggregates person-level data, recorded for the purpose of care planning and provision of care, to compare quality of care and efficiency of services.”

...“External regulatory controls are the most developed quality assurance approach but enforcement might be lenient.

England, France have accreditation for home care providers. Outcomes, quality of life, choice and human dignity are the quality dimensions most often included in accreditation and standards. Specific regulatory protection mechanisms designed to prevent elder abuse range from ombudsman to adult guardianship systems and complaint mechanisms. Despite regulation, compliance and enforcement may not be strong enough. There are still questions regarding the effectiveness of fines, warnings and threat of closure. Too much of it can stifle innovation or discourage providers from going beyond minimum requirements.”

***

3204-03

Caring for people with chronic conditions. A health system perspective

“…One of the greatest challenges that will face health systems globally in the twenty-first century will be the increasing burden of chronic diseases (WHO 2002). Greater longevity, “modernization” of lifestyles, with increasing exposure to many chronic disease risk factors, and the growing ability to intervene to keep people alive who previously would have died have combined to change the burden of diseases confronting health systems…”

“…Yet healthcare is still largely built around an acute, episodic model of care that is ill-equipped to meet the requirements of those with chronic health problems. Chronic conditions frequently go untreated or are poorly controlled until more serious and acute complications arise. Even when chronic conditions are recognized, there is often a large gap between evidence-based treatment guidelines and current practice...”

xxxxxx

“…The fact that chronic diseases impose a significant economic burden, measured in the different ways set out in the preceding section, does not by itself necessarily imply that investment in chronic disease management is an economically sensible way forward. Such an assessment depends less on the costs of the existing disease burden but rather on that part of the disease costs that can be averted through the intervention (hence, the benefits of the intervention) set against the costs of carrying out the intervention. This is what a proper “economic evaluation” should assess, and it cannot be assumed that the net benefits will be positive...”

“…Costs and benefits of a given chronic disease management intervention differ according to the perspective taken. Table 3.4 provides a typology of the different costs and benefits from the four main perspectives commonly adopted: the patient, the health plan/provider, the employer and society. If the maximization of societal welfare is the overarching policy objective, as in theory it should be, then the societal perspective is the “right” perspective to assume. However, to explain actual decision making it is often useful to understand the perspective of the different players, to see how they oppose and/or substitute each other, recognizing that this may ultimately produce a less than optimal societal output. This should also provide public policy makers with indications of how to alter incentives for private actors in a way that stimulates them to approximate better to the optimal societal outcome…”

“…As we assume that the patient will be enrolled in a health insurance scheme, the only direct costs carried by the patient will be those that the health insurance organization (i.e. the plan/provider) passes on to him or her, through increased premiums or out-of-pocket payments, as a result of reduced wages in response to greater employer payments for health insurance. The provider of the chronic disease management programme faces three types of cost: (fixed) set-up costs (e.g. for information technology systems, staffing costs for the management of the programme), operating costs (primarily for human resources to deliver services in a coordinated manner) and adverse selection costs (arising from increased enrolment of high-cost patients in response to the improved reputation of a given programme)…”

“…There are three primary benefits that may be derived from improved chronic disease management:

• improved health (i.e. quantity and quality of life years gained), experienced by the patient

• long-term cost savings from complications avoided and healthcare utilization reduced, experienced by the plan, the providers and potentially employers)

• workplace productivity gains, experienced by patients and their employers.

As there is often misunderstanding, it is important to emphasize that the outcome “improved health” does represent an economic benefit as much as a health benefit. Improved health increases the lifetime consumption possibilities of individuals, thereby directly augmenting utility – the maximization of which is seen by economists to be the ultimate objective of human endeavour. The economic benefit is thus clearly not limited to the more narrow perspective of cost savings or labour productivity gains. Therefore, a first essential input into the economic evaluation of any health programme is evidence of its effectiveness in terms of health improvement, measured, for instance, by the quantity and/or quality of life of the patient(s). After all, health improvement should be the primary purpose of any health intervention, and hence also the primary criterion for judging its value. If, in addition, the programme leads to cost saving and/or labour productivity gains, these are welcome side effects, but they should not be the main criterion for judging the economic desirability of a health programme. If the intervention succeeds in achieving a certain health improvement at a cost that is lower than the resulting benefit,5 then the investment is economically worthwhile irrespective of whether there are additional cost savings and/or labour productivity effects...”

“… The evaluation of chronic disease management programmes does require careful preparation and ideally has to be built into the development of the programme from the outset. Few countries have so far actively adopted the idea that evaluation (not to mention a full economic evaluation) should be an integral component of public health programmes. Rare exceptions include the Netherlands, Canada, Australia and the United Kingdom. Furthermore, the fact that evaluations have been carried out does not, by itself, say anything about their quality and hence their informative value. Very few have collected actual health outcomes, concentrating instead on the admittedly easier to obtain process indicators (such as resource use or admission rates)…”

“…On November 18, 2011, the Ontario Long Term Care Association (OLTCA), the Ontario Association of Non-Profit Homes and Services for Seniors (OANHSS), the Ontario Association of Residents’ Councils (OARC) and Concerned Friends of Ontario Citizens in Care Facilities created the Long-Term Care Task Force on Resident Care and Safety in response to media reports of incidents of abuse and neglect in long-term care homes and underreporting of these incidents. These organisations shared the concerns of the public and the Minister of Health and Long-Term Care about resident care and safety.

Independent of government, the Task Force was made up of a wide range of representatives from the long-term care sector: Family and Residents’ Councils, nurses, long-term care physicians, personal support workers, unions, long-term care provider associations and advocates. The Task Force’s external chair was Dr. Gail Donner, former Dean and Professor Emerita, Lawrence S. Bloomberg Faculty of Nursing, University of Toronto…”

“…The Task Force believes that long-term care is a highly specialised area that focuses on the care of a diverse group of residents with complex conditions and needs. Long-term care requires specialised leaders and skilled staff to care for some of the most vulnerable people in our society. Residents have the right to courtesy and respect, excellent care in a safe environment, and protection from abuse and neglect. Everyone should know how to report abuse and neglect and do so without fear of reprisal. Long-term care homes should do all in their power to ensure that these rights are upheld.

Ontario has strong legislation to support the care and safety of long-term care residents and to prevent abuse and neglect. Strong laws are an excellent and necessary beginning but, clearly, they are not enough to eliminate abuse and neglect in all long-term care homes. The Task Force listened to the voices of residents, families, staff, advocates and other stakeholders, confirmed the reasons why abuse and neglect occur, and identified 18 actions to improve the care and safety of residents in long-term care homes…”

“…Long-term care institutions refer to nursing and residential care facilities which provide accommodation and long-term care as a package. Beds in adapted living arrangements for persons who require help while guaranteeing a high degree of autonomy and self control are not included. For international comparisons, beds in rehabilitation centers are also not included.

However, there are variations in data coverage across countries. Several countries only include beds in

publicly-funded LTC institutions, while others also include private institutions (both profit and non-forprofit). Some countries also include beds in treatment centers for addicted people, psychiatric units of

general or specialised hospitals, and rehabilitation centers...”

“…The number of beds in long-term care (LTC) institutions and in LTC departments in hospitals provides a measure of the resources available for delivering LTC services to individuals outside of their home. Long-term care institutions refer to nursing and residential care facilities which provide accommodation and long-term care as a package.

They include specially designed institutions or hospitallike settings where the predominant service component is long-term care for people with moderate to severe functional restrictions. On average across OECD countries, there were 44 beds in LTC institutions and 6 beds in LTC departments in hospitals

per 1 000 people aged 65 and over in 2009…”

“…While most countries report very few beds allocated for LTC in hospitals, some countries continue to use hospital beds quite extensively for LTC purposes. In Korea, there are nearly as many LTC beds in hospitals as there are in dedicated LTC institutions. However, the number of beds in LTC institutions has increased in recent years, especially following the introduction of Korea’s public long-term care insurance programme in 2008. In Japan, there is also a fairly large number of hospital beds that have traditionally

been used for long-term care, but there have also been recent increases in the number of beds in LTC institutions.

Among European countries, Finland and Ireland maintain a fairly large number of LTC beds in hospitals. In Finland, local governments are responsible for managing both health and long-term care services, and have traditionally used hospitals to provide at least some long-term care. In both Finland and Ireland, there has been however a recent rise in the number of beds in LTC institutions which has been accompanied by a reduction in LTC beds in hospitals.

Many other OECD countries have developed the capacity of LTC institutions to receive LTC patients once they no longer need acute care in hospitals, in order to free up costly hospital beds. The number of LTC beds in institutions has increased more rapidly than the number of LTC beds in hospitals in most countries (Figure 8.7.2). It has grown particularly quickly in Korea and Spain, although it started from a relatively low level and still remains well below the OECD average.

In Australia also, the number of beds in institutions has increased rapidly over the past ten years. In Sweden, both the number of LTC beds in hospitals and in LTC institutions has declined slightly over the past decade, although the capacity still remains the highest of all countries. Sweden has implemented various measures in recent years to promote home-based care, including the use of cash benefits to promote home living and the expansion of community-based LTC (Colombo et al., 2011).

Providing LTC in institutions is generally more expensive than home-based care, if only because of the additional cost of board and lodging. However, depending on individual circumstances, a move to LTC institutions may be the most appropriate and cost-effective option, for example for people living alone and requiring round the clock care and supervision (Wiener et al., 2009) or people living in remote areas with limited home-care support…”

***

5135-03

DEMENTIA IN THE AMERICAS. CURRENT AND FUTURE COST AND PREVALENCE OF ALZHEIMER’S DISEASE AND OTHER DEMENTIAS

“…Dementia, including Alzheimer’s disease, is one of our biggest public health challenges. Today, over

35 million people worldwide currently live with the condition and this number is expected to double by

2030 and more than triple by 2050 to 115 million.

The increase in the number of people living with dementia will be most stark in low and middle income countries which will account for more than two thirds of cases by 2050. The Americas – specifically Latin America – is a region that will be most impacted by the shift, where cases will rise from more than 7.8 million people today to over 27 million by 2050. We estimate that dementia cost the Americas US$235.8 billion dollars in 2010 for informal care, direct medical care and social care, and that these costs will spiral as numbers increase…”

“…Currently, 58% of all people with dementia live in low and middle income countries. This is expected to rise to 71% by 2050. Over the next 20 years, we forecast that there will be a 40% increase in the number of people with dementia in Europe, a 63% increase in North America, a 77% increase in the southern Latin American cone (e.g. Argentina and Chile) and an 89% increase in the developed Asia Pacific countries. These figures are to be compared with 117% growth in East Asia, 107% increase in South Asia, a 134 to 146% increase in the rest of Latin America, and a 125% in North Africa and the Middle East…”

“…From 2010 to 2050, numbers of people with dementia will increase by 151% in North America, by 210% in the Southern Cone, by 214% in the Latin Caribbean countries, by 237% in the non-Latin Caribbean, by 414% in Mexico, by 422% in Brazil, by 445% in the Andean area, and by 449% in the Central American Isthmus. These different rates of increase in numbers of people with dementia reflect the different pace of population ageing in these regions...”

“…Few if any societies have truly faced up to the magnitude of the long term elderly care crisis. if this system fails it will have devastating consequences for elderly individuals, their families, the economy and wider society. Without swift action, such a gloomy outlook is probable rather than possible.longevity may be an outstanding social achievement, but it brings with it large increases in disabilities and chronic conditions that could overwhelm formal and informal care networks.

Giving the elderly a decent and dignified life is one of the biggest challenges facing governments everywhere as they struggle to provide housing, medical services, transportation, nursing and home care.

Compared to other areas of healthcare, long term elderly care has received very little attention. therefore, as part of its mission to foster excellence in eldercare, the lien Foundation commissioned KPMG to research the existing state of long term care and look at innovative new models of best practice that can meet the rapidly increasing demand with available financial, human and physical resources…”

x x x

“….The specter of an aging society is creeping up on the worlds’ economies. this critical phenomenon has the potential to overwhelm entire health systems and new approaches are needed fast.

Having sought the views of some of the world’s leading thinkers on the subject, it is apparent that there is no single, breakthrough idea. However, our search has come up with a number of highly innovative and interesting approaches that together can form the building blocks of a new era in elderly care. as with all complex interventions, many of these blocks have to be put in place concurrently, which calls for a high level of implementation expertise. three findings stand out as being critical and relevant to every society, regardless of where they have progressed in their journey:

Firstly, the debate over finance threatens to obscure the scale and gravity of the overall challenge. nevertheless, funding is a critical issue, as most governments are cash-strapped and the next generation may be unable or unwilling to foot the bill for care. increasingly innovative new mixes of public and private finance are needed, along with new ways to allow older people to save more for retirement.

Secondly, care should be redesigned to break down organizational boundaries through greater integration. the medical model has to change in favor of a new philosophy and practical methods that pay more attention to people’s needs and aspirations, rather than to the treatment of disease.

And finally, given the societal impact of elderly care, the discussion should take center stage and involve government, private and non-governmental bodies and providers, as well as the wider public. only through such wide scale involvement is it possible to address the critical issues of public policy, models of care, housing and personal preparation for old age…”

“More and more people throughout the world are reaching much older age. While most enjoy active lives, increasing numbers will require care for disabilities produced by diseases that cannot be cured. Chronic conditions are lengthy and require a continuum of care services throughout the life course. The global disease burden has now changed but health systems are still largely focused on cure and are not sufficiently orientated to provide care for all those who need it. However much is achieved in terms of prevention and treatment, accompanying the longevity revolution is an added imperative: to develop a culture of care that is sustainable, affordable, compassionate and universal. We understand that the contexts in which care provision is needed are culturally diverse and undergoing rapid change. Smaller, more complex and geographically more dispersed family networks are becoming less able to provide care without additional reinforcement. There is a growing global crisis of “family insufficiency”.”

Xxxx

“...

1. We signal the need for a fundamental shift in the paradigm and call for the laying of the foundation of a global “culture of care” that places the person – as both the receiver and provider of care – at its very heart and promotes intergenerational dialogue and solidarity.

2. We reaffirm the United Nations Principles for Older Persons and fully endorse their emphasis on independence, dignity, self-fulfillment, participation and care. These principles should be embedded in all actions on care.

3. We urge governments, intergovernmental agencies, civil society, and the private sector to respect, protect and guarantee the human rights of older persons who may have a reduced capacity to effectively exercise these rights due to frailty, cognitive impairment, disability or isolation...”

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